Health Coaching: Co-Empowering the Cancer Patient
Cancer InCytes Magazine
Volume 7, Issue 1, Summer 2020
June 7, 2020
Managing Editor: Juliana Zhu, Esq.
With a staggering number of 1.7 million new cases this year, cancer has become a widespread, prevalent problem that has invaded our lives and society. Almost all of us would know at least one cancer patient or survivor, if we are not one ourselves. Yet, its journey is so individualized and traumatic to the cancer-stricken that it makes for a lonely and long-winded path towards the unknown. The reality of cancer looms so large that often, what the cancer patient goes through is beyond what he or she can even fathom, accept or steadfastly deal with.
The physical part of a cancer treatment is grueling and requires tremendous strength and courage not to mention financial capability or support. Yet, there is also that unseen aspect of the journey that is just as painful and debilitating—the erosion of the cancer patient’s confidence and resilience as he fights against hopelessness and despondency on a day-to-day basis. For one who is faced with cancer, the challenge is to go beyond the present and the pain to enable one to maximize life and time.
This is where Health Coaching has come to its existence. It is an emerging field with a newly developed National Board Certification for Health & Wellness Coaching (NBC-HWC). (See https://nbhwc.org/ for more information.), “Health and Wellness Coaches partner with clients seeking self-directed, lasting changes, aligned with their values, which promote health and wellness and, thereby, enhance well-being. In the course of their work, health and wellness coaches display unconditional positive regard for their clients and a belief in their capacity for change, and honoring that each client is an expert on his or her life, while ensuring that all interactions are respectful and non-judgmental.”
Health coaching aims to strengthen a cancer patient from within by building confidence and developing resilience, empowering the patient to live life, no matter how short or treatment-ridden, as he/she sees fit and to its maximum potential. It is supportive as it honoring to the one who has been dealt with such a high-impact, life-altering illness—that he or she can continue to take part in shaping his/her remaining time in the way that he or she so desires. It helps to carry the burden with the patient, whose journey with cancer may be challenging, but which does need not be traversed alone.
Cancer can be a life-changing diagnosis, and Health Coach Lisa Yen, whose husband is battling Neuroendocrine Tumor (NET) knows this experience all too well. As cancer is rarely a straightforward path to navigate, they have gone through a maze of surgeries, injection treatments, radiofrequency ablation treatment procedures, scans and MRIs with recurrent tumors and some treatment successes. Lisa knows firsthand how it is like to be with someone who is going through such a heart-wrenching journey. She has learned the kind of support that people with cancer need. While Health Coaching may be relatively new, its benefits to the patient are undeniable. Though Health Coaching may not reverse the cancer itself, it may change the patient's experience of the cancer, and how it affects his/her life. Below, Lisa shares her experience and what health coaching really means.
1. What is the most valuable benefit of health coaching? What needs of the cancer patients are being addressed by health coaching?
The benefits of health coaching include building confidence, improving resilience, and empowering the patient. By giving the patient a safe space that is centered on the patient’s needs and listening with empathy, trust is built between the coach and the client. Those living with neuroendocrine cancer (or neuroendocrine tumor or NET), for example, often have issues with trust (doi: 10.1001/jamaoncol.2018.0495), especially with health care professionals since they tend to seek answer from multiple providers (average of six) and make multiple health care visits (average of nearly twelve) over many years (average of five to nine years) before they are correctly diagnosed with NET (doi: 10.1200/JGO.2015.002980).
Research data suggests that providing social support and improving self-efficacy can influence the quality of life for NET patients. For NET patients who have had issues with trust due to years of misdiagnosis and barriers to care, rebuilding trust with healthcare providers may be especially crucial.
Health coaching has been shown to positively affect the quality of life for those living with chronic disease as well as those with cancer. Not only is fostering a healthy lifestyle important to improve overall sense of wellbeing, the coaching strategy also engages a patient-centered approach to build resilience, increase self-efficacy and self-empowerment, and increase optimism and hope. Health coaching has been shown to positively impact those with diabetes by improving HbA1Cs, decreasing stress levels, and improving overall perceived health status. Cancer survivors who received health and wellness coaching experienced a significant increase in their overall quality of life, and decreased levels of depression and anxiety.
While we all need self-care, those living with cancer have a greater need but are the ones least likely to be able to afford it or make the time and space for it in their lives.
2. As a Nurse Practitioner, what mindset or practices did you imbibe additionally to be a health coach? What do you do differently as a health coach?
When my husband Tom was diagnosed with NET on January 2, 2015, everything changed. My life was turned upside down when he became suddenly ill and almost died. (He tells his story in his own words here.)
It felt like a bomb went off as Tom was found to have internal bleeding. Everything spiraled downhill quickly as the doctors, who were my own colleagues at the hospital where I was working cried with me as they told me that they were not sure he was going to make it through the night. He was so sick that, at that point, even though they saw multiple large tumors, it didn’t even matter what type of cancer he had because they weren’t sure if he would even live. I remember holding his hand tightly all night and praying, more like begging, for time.
One of the biggest takeaways from this journey is the gift of perspective. I suddenly gained clarity as to what was important to me. My focus became my husband and walking alongside him in this journey.
I understand from firsthand experience how the challenges of living with a rare disease and its uncertain course leads to a high degree of anxiety, depression, and fatigue in both patients and caregivers. I empathize with the impact of the disease, not simply physically but in all aspects of health and wellness including psychological, emotional, mental, spiritual, and relationship. My passion is to improve the quality of life for those who have been touched by NET by helping them to live and thrive.
Becoming a health coach is similar to learning a new language. There may be some related sounds or words, yet they are entirely different. As a NP, my relationship with patients was directional. I was the expert and authority, the one with power and control, imparting knowledge and information to the patient. I was the one deciding what a patient should do and telling him/her what to do and how to do it. As a health coach, the client is the expert and is an active participant while the coach supports the client in his/her health and wellness journey. Health coaches view the client as a whole person. As a health coach, I am able to go beyond physical needs traditionally addressed by healthcare professionals and explore the client’s mental, emotional, spiritual, environmental, and social wellbeing. The process centers on the client’s desired goals (not the coach’s) and builds on his/her strengths and values in order to reach those goals. In contrast to my role as a nurse practitioner, it is less about finding solutions and answers and more about self-discovery and personal growth. While the process is action-oriented, there is less emphasis on doing and more emphasis on being.
3. On a more personal note, you are trying to spread awareness about Neuroendocrine Tumor as an advocacy. What should we know about it?
NET is known as a “rare cancer” but it’s not as rare as you might think. With increasing awareness and improved diagnostic tools, the incidence of NET is increasing. Still, NET is difficult to diagnose and because NET tends to be slow-growing, NET patients tend to live for years rather than months. Many tend to live with it like a chronic disease. Each person’s presentation, symptoms, and medical journey prove to be unique. Because there is not one single pathway and because the disease’s course is unpredictable, NET patients live with a high degree of uncertainty.
Because NET patients may not suffer the well-known cancer-related symptom of weight loss and they do not receive treatments that cause them to lose their hair, they often hear statements reflecting surprise that they don’t appear to look like they have cancer. It’s dubbed the “but-you-look-so-good” disease.
In this blogpost I wrote for LACNETS, I shared some basic FAQs about NET:
4. How does health coaching help cancer patients, particularly those suffering Neuroendocrine Tumor? Can other cancer patients benefit from health coaching as well?
Cancer survivors who received health and wellness coaching experienced a significant increase in their overall quality of life, and decreased levels of depression and anxiety (Galantino, Mary Louise, Pam Schmid, Anthony Milos, Sheila Leonard, Stasia Botis, Courtney Dagan, William Albert, Janet Teixeira, and Jun Mao. 2009. "Longitudinal Benefits of Wellness Coaching Interventions for Cancer Survivors." The International Journal of Interdisciplinary Social Sciences: Annual Review 4 (10): 41-58. doi:10.18848/1833-1882/CGP/v04i10/53020.) It has the potential to improve the overall wellbeing of cancer survivors.
Many NET patients do not identify with the term “cancer survivor” since most survivorship services are geared towards those who are in remission and have completed treatment. In contrast to those living with other types of cancer, NET patients often live with advanced, metastatic disease for many years and have an unpredictable treatment course.
While the NET journey may be unpredictable with factors outside of the patient’s control, the client can choose to work on lifestyle choices within one’s control, for example, nutrition, movement, sleep/rest, mind-body connection, spirituality, environment, or relationships. Through this process, the client gains the knowledge, skills, and confidence to make lasting and positive behavioral choices. Through learning how to make positive behavioral changes, NET patients report feeling empowered and gaining a new perspective. Ultimately, the hope is to improve their overall quality of life.
5. As a health coach and patient ally, what is the end goal for the patient? Or at least the best-picture scenario?
A NET patient and patient advocate Ronny Allan says on his blog, “Adding life to years is as important as adding years to life.” This statement encompasses the end goal of health coaching. Ultimately, the goal is to learn to thrive, despite living with cancer.
For more on health coaching, check out these pages:
This is a presentation where my husband and I shared our journey at a monthly LACNETS meeting in 2017: https://www.youtube.com/watch?v=_Ghe7hfkmlY